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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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rumatoligest sayn hurtful things

Messages
44
Well got my pip assessment at home tmoz so went got letters of doctor of cardiologist rumcoligist so had some evidence of symptoms.
Was reading though the letter of the rumtolgist he sayn got muskulsecklul symptoms of pain etc at end letter said i need see a phycologist as am very low etc ( am ill i gt no hellp wht u expect me smile) i was in lot pain that day he pretty much said i am somatomisation?? Isnt that like when someone sayn u hypo all in head? It not i am in lot pain i also got pots witch is seriously affected my mobilety latley i really upset how can on one bit letter say i definitely got muskelsecklton pain then say in my head? He then wen on say at end i would not like conquest of phycologist review what that spos mean it really not in my head anyone nos me will tell u that sorry for rant new somone understand
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
It may be, according to your post that he said you have 'symptoms of musculoskeletal pain' just doctor speak for he hasn't a clue, they like to throw a few things out when they actually know nothing. Not worth getting upset about them, I know that's easier said than done, we've all been there and understand how you feel.

Just focus on explaining how bad your pain is and how POTS affect your ability to live a normal life. Also whatever the other doctors have said about your illness. Good luck with the assessment.
 

Debbie23

Senior Member
Messages
137
I'm sorry you are having a hard time. :hug: Have you been on benefits and work? You have to pay to access their guides, I think it's about £20 but it is truly worth every penny they tell you how to fill out the forms to make it absolutely clear what your difficulties are. But they also tell you what to do at the medical and if you need to appeal. If you do need to appeal don't panic, I know that's easy to say but it's not the end of the road for gaining the support you need. Again benefits and work have very good advice on their site.

If I'm understanding correctly you also have the medical at home? I could be wrong here but my understanding is it's very, very difficult to get a medical done at home which may hopefully suggest your disability is being taken seriously. Is there anyone you could ask to be with you just to sit in so you feel supported during the medical? Someone you trust and feel comfortable with?

I also could be wrong here too, but if he's saying you have musculoskeletal pain and then saying at the end you are very low so it might be an idea for you to see a psychologist, especially if you are low, is it possible he's not necessarily linking them together but saying that as you are so poorly you may need some emotional support? As in your physical difficulties are causing emotional problems, rather rhan the other way round. Could you ask someone else to read the letter and give their opinion like your GP? I recognise that you won't have enough time now to ask your GP to look at it before the assessment tomorrow, but I'm wondering if they can reassure you in hindsight if you see what I mean if you decide to use the letter. In the meantime is there anyone else like a family member or friend you'd feel comfortable with reading it as well and offering an opinion?

The reason I ask is that I once had an upsetting experience with a rheumatologist who reduced me to tears in the hospital after I'd left his clinic. But the letter he wrote really wasn't that bad. I felt upset by it at first because of some of the wording, but my GP explained that some of the wording had a medical context that wasn't a judgement of me, like it would have been in another context if you see what I mean. I'm wondering if you are worked up about the appointment tomorrow (quite understandably!) but are focussing on every small thing that may undermine them taking you seriously.

That may be appallingly clumsily worded, if it is I apologise! I'm not trying to dismiss your reading of the letter as it is, or your feelings. Just trying to offer a different perspective. I hope tomorrow goes okay for you. :hug:
 
Messages
44
Thank u for yr replys everyone
Yes am very nervous about tmoz as also got esa assessment at centre on 23 rd just worryd thy dont belive me then seeing word phycologist and he wrote she wont like conquestes of it witch dont understand at all jist felt like he was sayn all in head u no thank again for all yr replys i will keep informed abt tmoz fingerscrossed
 

barbc56

Senior Member
Messages
3,657
The rheumatologist who diagnosed me wrote in his summary that I had depression pre FM, resolved through medication, and any depression I was experiencing was situational depression. He also put that any depression issues were being monitored by my psychiatrist. I felt comfortable with that.

Unfortunately, he also put I have migraines, which thankfully I don't.

A lot of it has to do with the wording. Focusing not only on the label but how the symptoms impact you is also helpful.

Good luck!

Barb